After learning of my little sister’s diagnosis, my parents have decided to sign her up for multiple treatments which included photodynamic therapy (UV-B radiation) with a combination of topical treatment and vitamins. My sister has started to apply creams (Elidel, 1% tofacitinib) and sunscreen daily as part of the topical treatment, take vitamins such as Alpha Lipoic Acid and Heliocare™ pills, and attend a UV-B radiation session twice a week. The goal of these treatments is to restore pigment to the skin affected by vitiligo.
However, the treatment has drawbacks. We have to cancel her biweekly light treatments whenever the pain of her blisters, formed by constant exposure to radiation, becomes unbearable. These blisters, which form predominantly on her neck and chin, have affected her ability to play the violin, an activity that she has been involved in for five years. As the blisters heal, the skin peels off, making it tender and itchy. It pains me to watch my little sister scratch her face, so whenever I see her doing that, I command her to stop. The radiation has also made her very photosensitive during P.E. and so she’s unable to perform some physical activities. Currently, my younger sister sees multiple dermatologists, including one at Stanford. As of now, the therapy has achieved some positive results, with the spots on her armpits and the original spot on her mouth completely disappearing. However, during the span of the treatment, the vitiligo has quickly spread to other parts of her body. The phototherapy (light treatment) works very slowly, making it difficult to treat the rapidly-spreading vitiligo.
However, we are optimistic due to the repigmented spots and we are praying for a miracle.